CancerCompass message board discussion started by Linda l on 7/6/2007 http://www.cancercompass.com/message-board/message/all,14086,0.htm Mon, 06 Oct 2008 00:00:00 GMT Mon, 06 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L. Linda l Fri, 06 Jul 2007 00:00:00 GMT How WONDERFUL...I haven't written in awhile either (this is Jane's sister Melissa)....she has been battling urachal for what is going on 5 years with re-occurences about every 2 years that they treat surgically or now since she has lymphnode mets, via chemo. In February, the cancer went to her lungs (but has stayed in her pelvic area for 4 1/2 years). She did three regimes of cisplatin, ifosfomide, taxel..it was harsh but by the 2nd treatment, she was symptom free (no oxygen, no cough, could sleep laying down). Four weeks ago, the CAT scan indicated that the chemo was not successful but the Dr. was confused since she looks great feels great and has not one cancer related symptom. He was planning to move her on the Gemzar regime but has decided to hold off doing anything since she looks and feels so good....he thinks something positive is going on but he is not sure what exactly that is.  She has a tremendous amount of faith and alot of folks praying for her (I think that is the "it" she has going for her) but as far as she is concerned, if you don't feel like you have cancer, then you don't.  You are right, never give up, strange and miraculous things can happen, you just may have to go thru some tough times to get there!!!!! I'm writing this for her since she just took her Jeep Wrangler to the beach...life is good!!!!!Melissa (Jane's sister)     Urachualknower Sat, 07 Jul 2007 00:00:00 GMT  On 7/6/2007 Linda l wrote:It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L.Linda and Janes sisterI first want to thank-you for giving me hope! I come to this message board often to look for some answers to what seemed to be hopeless. I too have urachal cancer and I am on my second chemo drug ,we are praying that this one will work.I have read all your posts and often wondered how you ,Jane and all other urachal cancer survivors are doing. It would be really nice to hear from dr. song bird and anyone else who has posted a message . It would give us all little hope if we can hear that people can survive this.Your right never give up !!Christine Daisy Bear Sun, 08 Jul 2007 00:00:00 GMT  On 7/7/2007 Urachualknower wrote:How WONDERFUL...I haven't written in awhile either (this is Jane's sister Melissa)....she has been battling urachal for what is going on 5 years with re-occurences about every 2 years that they treat surgically or now since she has lymphnode mets, via chemo. In February, the cancer went to her lungs (but has stayed in her pelvic area for 4 1/2 years). She did three regimes of cisplatin, ifosfomide, taxel..it was harsh but by the 2nd treatment, she was symptom free (no oxygen, no cough, could sleep laying down). Four weeks ago, the CAT scan indicated that the chemo was not successful but the Dr. was confused since she looks great feels great and has not one cancer related symptom. He was planning to move her on the Gemzar regime but has decided to hold off doing anything since she looks and feels so good....he thinks something positive is going on but he is not sure what exactly that is.  She has a tremendous amount of faith and alot of folks praying for her (I think that is the "it" she has going for her) but as far as she is concerned, if you don't feel like you have cancer, then you don't.  You are right, never give up, strange and miraculous things can happen, you just may have to go thru some tough times to get there!!!!! I'm writing this for her since she just took her Jeep Wrangler to the beach...life is good!!!!!Melissa (Jane's sister)    Melissa,   It was so inspiring to hear about Jane. She is so lucky to have your great support. My sister is still a life saver and also my youngest son. Prayers have made this a miracle for me, also.                              How old is Jane? Iam 57, was 53 when diagnosed. Keep me posted on any new progress.                  God Bless,   Linda  Linda l Mon, 09 Jul 2007 00:00:00 GMT Daisy Bear,    Not sure if you remember who I am....when I was 1st dx'd in Jan 07 I found your posts and you helped me get to the bladder cancer web cafe. I have been looking for YOU :)    I am sorry to hear what all you are going thru. I was dx'd with TCC grade 3 T3a and urachal cancer. Had RC and neobladder. There is life after it - really. Please email back - I think we can help each other with this.  Take care, Bless you, Holly Bloomin64 Mon, 09 Jul 2007 00:00:00 GMT  On 7/9/2007 Bloomin64 wrote:Daisy Bear,    Not sure if you remember who I am....when I was 1st dx'd in Jan 07 I found your posts and you helped me get to the bladder cancer web cafe. I have been looking for YOU :)    I am sorry to hear what all you are going thru. I was dx'd with TCC grade 3 T3a and urachal cancer. Had RC and neobladder. There is life after it - really. Please email back - I think we can help each other with this.  Take care, Bless you, HollyHolly I am so glad I was able to help you in some small way. I think you are amazing to be so positive about what you have been through. I am still on chemo, but they changed the drug because the ct scan showed the lymph node had grew a little. All the other spots had stayed the same , so it could have been far worse.I am trying to enjoy the summer with my boys, we just put in a pool and we are loving it!!!Hope to hear from you soon  Christine Daisy Bear Wed, 01 Aug 2007 00:00:00 GMT Hey Christine, just checking in to see how you are doing.  My husband is on his 2nd round of chemo, finishing up tomorrow morning.  He's feeling ok, but has started to lose most of what hair he had left!   They won't do any scans until the middle of September so we won't know if they need to change the chemo or not.Well I hope all is well and your enjoying your pool!  Email back if you feel up to it!God bless   Basketballmom Fri, 31 Aug 2007 00:00:00 GMT  On 8/31/2007 Basketballmom wrote:Hey Christine, just checking in to see how you are doing.  My husband is on his 2nd round of chemo, finishing up tomorrow morning.  He's feeling ok, but has started to lose most of what hair he had left!   They won't do any scans until the middle of September so we won't know if they need to change the chemo or not.Well I hope all is well and your enjoying your pool!  Email back if you feel up to it!God bless  Hello I was hoping to hear from you!! Did your husband get the porta cath?What drug is your husband getting? I am getting carboplatin and taxol right now. I just got the ct scan results and they show no new growth since june. they will give me 3 more cycles and do another ct scan to see what effect it is having. I hope  your husbands scans come back with really good news too!!!dasiy bear Daisy Bear Fri, 31 Aug 2007 00:00:00 GMT Hi, good to hear from you!  He's on cisplatin for a couple hours in the morning then 5FU for 18 hours.  He finished up his 2nd round this morning so he's off for 2 weeks.  They will scan him on the 13th of September.  I'm not too confident that the chemo worked though, he has 2 tumors on his incision line that don't look any smaller, in fact, one looks bigger.  So not sure what they will do next.  I'm surprised that he doesn't start to feel sick until he's at the end of his chemo cycle.  Is it that way with you too?  He's not feeling good at all today, but the early part of the week, he was feeling ok.  Not great, but nothing like now.  He was almost bald to begin with but has lost almost what hair he had remaining.  I don't know why but I was surprised by that.  I don't know why I didn't think he'd lose his hair!  Silly me!   How are you doing?  How's the family holding up?Talk to you soon!   Basketballmom Sat, 01 Sep 2007 00:00:00 GMT  On 9/1/2007 Basketballmom wrote:Hi, good to hear from you!  He's on cisplatin for a couple hours in the morning then 5FU for 18 hours.  He finished up his 2nd round this morning so he's off for 2 weeks.  They will scan him on the 13th of September.  I'm not too confident that the chemo worked though, he has 2 tumors on his incision line that don't look any smaller, in fact, one looks bigger.  So not sure what they will do next.  I'm surprised that he doesn't start to feel sick until he's at the end of his chemo cycle.  Is it that way with you too?  He's not feeling good at all today, but the early part of the week, he was feeling ok.  Not great, but nothing like now.  He was almost bald to begin with but has lost almost what hair he had remaining.  I don't know why but I was surprised by that.  I don't know why I didn't think he'd lose his hair!  Silly me!   How are you doing?  How's the family holding up?Talk to you soon!  I don't remember if you told me your first name or not! so forgive me if I forgot!! Anyways it sounds like your husband is on a very different drug (4fu) which I don't know what that is? But I do know cisplatian can be rough!!! I didn't lose my hair until they changed my drug to what I get know. You said you don't think chemo has worked!! can you see his tumor on the outside of his body??If this one didn't work lets hope the next one will?? Do you know if your husbands cancer was signet ring cell?because that is what my pathology report said mine was. Just makes me think if that determines what chemo they try?My kids are getting ready to go back to school this week and they are looking forward to it! One year ago this sept. 6 I found out I had cancer and I look back at what I have been through and it sounds like a nightmare come true. But I'm still here and I plan on being here for long time yet!!I hope the chemo has worked and the scans come back with great news!!I will be thinking of you on the 13 when I am getting my chemo that day and thinking positive thoughts for you and your husband.Please let me know how you are doing!!!!christine Daisy Bear Sun, 02 Sep 2007 00:00:00 GMT Hi Christine!  It's hard to believe it's been almost a year for us now too. He was originally diagnosed back in 2002 and was what we thought cancer free until last November.  It's crazy to think about all the stuff you two have been through in such a short time.  Heartbreaking, really.  I'm glad your doing ok.  My husband has a few tumors on the outside of his incision line from the big surgery back in February.  It doesn't seem like they are getting smaller but who knows.  The doctor said we should see them shrinking if the chemo is working.  Do you start back up on the 13th?  What do they have you on now?  My kids are staring school on the 10th and they are excited.  It's weird to have one driving, just wait!  Scary thoughts go through my head everytime she gets in the car!  But it helps me soooo much, since we live about a half hour away from where they go to school. They are really active and always need to be somewhere!Well, I better get ready to go, Dan's feeling better today and he's going to try to get out of the house!Take care and I'll talk to you soon!Shelly   Basketballmom Mon, 03 Sep 2007 00:00:00 GMT Hey Christine, just wanted to drop a line to see how you were doing. Email me when you can.God Bless!Shelly   Basketballmom Fri, 12 Oct 2007 00:00:00 GMT Hi Shelly   I didn't get your message in my e-mail and I haven't been on here for awhile. I did see find your message about your husband being stable and I hope that is still the same. I just finished another round of chemo and I had a cat scan today and I will get the results back nov. 1. I really don't know what is next in any out come of the results, in one way I wish for the cancer to be gone so I don't have to have anymore chemo and another part of me will worry if I am told they will stop the chemo and wait and see what happens. Kind of dump but your mind can play funny tricks on any practicle thoughts. Well I wish you and your husband all the positive thoughts I have and e-mail me soon , love to hear from you too.christine Daisy Bear Thu, 18 Oct 2007 00:00:00 GMT  On 7/6/2007 Linda l wrote:It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L. I am a survivor too. I was diagnosed with urachal cancer in early February 2006 and underwent surgery on 1 March 2006. A tumour the size of a tennis ball, emanating from my urachus and pressing on the top of my bladder, was removed, along with a mass of jelly spreading up to my liver. Half my bladder was also removed, but my belly button was left untouched - the scar just zig-zags round it! My lymph nodes were not affected, and the tumour had not spread, apart from creating the mass of low-grade jelly in my abdomen.I was subsequently referred to an oncologist, who confirmed that I had a urachal mucinous adenocarcinoma, which falls into the general category of PMP (pseudomyxoma peritonei), so I was referred to a PMP specialist clinic in the UK, where I now have regular CT scans and follow-up interviews with a consultant surgeon. Since my operation I have made excellent progress. I have had no chemo treatment and no further surgery. I have been told both by my oncologist and by my consultant surgeon that I am currently in remission and that they don't need to see me for another six months. I am 65 years of age, I feel fit and well, I play golf regularly and walk my dog for a mile each day. I was able to go skiing in January 2007 and I plan to go skiing again in January 2008.I worry a bit about the future, but my philosophy right now is to enjoy life to the full. I hope this gives hope to fellow-sufferers. Graham D Mon, 22 Oct 2007 00:00:00 GMT  On 10/22/2007 Graham D wrote: On 7/6/2007 Linda l wrote:It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L. I am a survivor too. I was diagnosed with urachal cancer in early February 2006 and underwent surgery on 1 March 2006. A tumour the size of a tennis ball, emanating from my urachus and pressing on the top of my bladder, was removed, along with a mass of jelly spreading up to my liver. Half my bladder was also removed, but my belly button was left untouched - the scar just zig-zags round it! My lymph nodes were not affected, and the tumour had not spread, apart from creating the mass of low-grade jelly in my abdomen.I was subsequently referred to an oncologist, who confirmed that I had a urachal mucinous adenocarcinoma, which falls into the general category of PMP (pseudomyxoma peritonei), so I was referred to a PMP specialist clinic in the UK, where I now have regular CT scans and follow-up interviews with a consultant surgeon. Since my operation I have made excellent progress. I have had no chemo treatment and no further surgery. I have been told both by my oncologist and by my consultant surgeon that I am currently in remission and that they don't need to see me for another six months. I am 65 years of age, I feel fit and well, I play golf regularly and walk my dog for a mile each day. I was able to go skiing in January 2007 and I plan to go skiing again in January 2008.I worry a bit about the future, but my philosophy right now is to enjoy life to the full. I hope this gives hope to fellow-sufferers.Graham I read your post and it worries me to know that you still have your belly button!!! It was the first thing my doctors here in canada told me would have to go!! A small price to pay! Sounds like everything else is being watched carefully and it sounds like you have good chance of beating this thing. I pray that you stay in remission and live your life to the fulliest! dasiy bear  Daisy Bear Tue, 23 Oct 2007 00:00:00 GMT Hey Christine, how are you feeling?  My husband always seems ok during the chemo but it's the week after that he feels the worst.  How come it takes so long to get your ct results?  We get there after a few days here.  That would drive me insane having to wait.  Dan goes on Friday for his next ct scan then we meet with the doctor on the following Monday to get the results.  I'll keep you posted.  How do we share our personal emails so we don't have to go through here?  I always forget where we were posting.Take care of yourself and I'll talk to you soon.Shelly  Basketballmom Tue, 23 Oct 2007 00:00:00 GMT  On 10/23/2007 Basketballmom wrote:Hey Christine, how are you feeling?  My husband always seems ok during the chemo but it's the week after that he feels the worst.  How come it takes so long to get your ct results?  We get there after a few days here.  That would drive me insane having to wait.  Dan goes on Friday for his next ct scan then we meet with the doctor on the following Monday to get the results.  I'll keep you posted.  How do we share our personal emails so we don't have to go through here?  I always forget where we were posting.Take care of yourself and I'll talk to you soon.Shelly Hi ShellyI will give you my e-mail but I don't know if it will be blocked by the cancer compass people? --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- . If this doesn't work we could try another site. Have you been on the www. dipex.org I know that there we could exchange addresses. I have to wait for my results because my doctor is away for a week. They also give me appointments that work best for me because we have to drive 2 1/2 hours to the hosptial. Hope you get my address.Christine Daisy Bear Wed, 24 Oct 2007 00:00:00 GMT Yes, they normally remove the belly button in the UK too, but I was not treated in a specialist urachal cancer unit - just a normal urology unit - and I guess that they did not positively identify the tumour as urachal until the histology report was received. I was then told it was a urachal mucinous adenocarcinoma and that my chances of surviving more than a few months were slim. But this prognosis has proved wrong. I am still here, 19 months later, physically fit and planning my skiing holiday in January. I have now been referred to a specialist PMP unit (appendix, bowel and urachal cancers) at another hospital, and the surgeons there normally remove the urachus, the belly buttion, spleen and gall bladder - and often the whole bladder too. But when they examined me 3 months post-op they decided that no further treatment or surgery was needed as I appeared to be fit and well.So far - fingers crossed - 19 months post op I have no indications of a recurrence of the cancer and the remaining slivers of mucous in my abdoment are shrinking and disappearing. I am currently in remission. Graham D Sat, 27 Oct 2007 00:00:00 GMT